Fundraising

Support

Information

Inspiration


TwitterFollow us on Twitter

FacebookFollow us on Facebook

Online Support

FacebookLGG Support Group

Join our mailing list

Life stories

Share your story

If you would like to contribute your own story or simply just some thoughts that you think may help other people, please email us and we would be delighted to feature you.

All we need is:

  1. a photograph in jpeg format
  2. your name (you can give just your first name if you prefer) and whether you are a patient, carer, relative or friend
  3. the type of tumour that you or your loved one has, the date it was diagnosed and a very brief outline of any treatment received
  4. what has enabled you to cope, and/or given you inspiration?
  5. what advice would you give to others affected by low-grade gliomas?
  6. do you have a particular quote, or an image, which gives you hope?

In this section, people share their stories about living with a low-grade glioma in order to pass their experiences, hope, and sources of inspiration on to you.

Featured this month are Vanessa, Wendy, Jo and Pippa. If you would like your life story to be featured in a future month, see opposite for details.

Vanessa – diagnosed 2016

My name is Vanessa and I'm married with 3 children. In February 2016 when I was 40 years old, I was diagnosed with a Grade 2 Diffuse Astrocytoma.

The only reason why I went to the doctors was because my very close friend and neighbour had just been diagnosed with a GBM and I was paranoid about some very mild symptoms. For a few months I had been occasionally getting a strange feeling of fullness / pressure in my head. These little episodes would last a few seconds and then went. I wouldn't have taken it seriously if it wasn't for my friend's diagnosis.

My doctor sent me for an MRI and it turned out that I had a 6cm tumour. I was so shocked as my doctor had said that he was sending me for the scan ‘to put my mind at rest' My first thoughts were that I wasn't going to be here to see my children grow up. It was devastating. I had a craniotomy on 6th May 2016. They were able to get about 96% out. I had some problems with movement and speech afterwards but they quickly resolved.

My Neurosurgeon then referred me to an Oncologist as there was a study that had just been released indicating that patients like me who had had surgery, had a better survival rate if they had Radiotherapy and Chemotherapy after the surgery. It was a very difficult decision to make as the study didn't have a control group who had been on watch and wait. It was only comparing the survival rates of radio and chemo vs radio alone.

After much soul searching, I eventually decided to go ahead with the further treatment and started the Radiotherapy in November 2016. This was a 6 week course and involved me travelling in to London every week day for treatment. This finished just before Christmas and then in January 2017, I started a course of 6 rounds of Chemotherapy. This eventually finished after some delays because of low platelets in November 2017. I am now on 4 monthly scans. My prognosis is good. My surgeon thinks that after all my treatment, that he thinks I have ‘decades', although as he says nobody really knows. Hopefully I'll now get to see my kids grow up.

Vanessa (right) with her sister AnnabelleThe whole experience has made us stronger as a family and has really taught me to live life and be positive. I don't know how I would have got through it without the amazing support of my family and friends. During Radiotherapy my friends did a rota so that I had someone coming up to London with me every day and between my wonderful husband, sister and aunt they have come to every scan, chemo treatment and consultant's appointment with me. I went to see a Naturopath and she recommended a number of supplements which I took to keep my immunity up. I also changed my diet and did regular exercise which helped and overall just kept really positive. ‘I can beat this' is what I kept saying to myself.

picture: Vanessa (right) with her sister Annabelle

Jo – diagnosed 2016

JoMy name is Jo Armstrong, I am 36 years old and in November 2016 I underwent an Endoscopic Third Ventriculostomy (ETV) to treat hydrocephalus that had occurred as a result of an intraventricular grade 1 neuronal-glial tumour. I shall never know conclusively but it is quite probable that the tumour and resulting hydrocephalus had been with me since birth because the symptoms I increasingly exhibited were present from early on.

My birth was a complicated breech which resulted in asphyxiation and a stay in intensive care. I was discharged from hospital with no apparent complications however from my earliest memories I recall feelings of unsteadiness. I couldn't stand being spun round quick or turned upside down. As time progressed feelings of pulling and dizziness increased, school was a nightmare and I struggled with dizziness every morning on getting up. When I felt sick in the morning and complained of this pulling sensation it was always put down to stress then ear and neck problems. Life was about getting through the next day of events when all I wanted to do was sit still in a quiet place. Everyone thought I was the shy kid, not wanting to integrate but that couldn't have been further from the truth.

When I look back the sole thing that kept me going over the years of not knowing what was wrong was the unrelenting support of my parents. They always believed that something more than just stress was causing my daily symptoms. The frustration we all felt that no one listened was finally alleviated when the Neurosurgeons at Queens Hospital, Romford took on the case. Two years prior to that, migraines became a daily issue and despite this my doctor thought it was my ears and requested an MRI. That was the catalyst for discovering the hydrocephalus. This led to dealings with another local hospital the experience being far from satisfactory but then by some strange turn of events Queens took on my case. We shall be eternally grateful to Mr Haliasos and his team who performed the operation. He believed that the symptoms I had been exhibiting all these years were as a result of the hydrocephalus and so recommended that an ETV was performed first. The tumour which had caused the hydrocephalus was in a part of the brain not easily assessable, so any surgeries to remove the tumour would be as a last resort.

The tumour is now monitored on a yearly basis following the initial 6 monthly check-ups. I have been given a life now free from symptoms and I pray that it continues, that the hole made in the brain remains open and that the tumour does not grow to a point that would cause symptoms.

I don't know what the future holds but what I do know is I've finally been given my life to live at this point in time and I don't ever want to be in a position of regret that I didn't do what I wanted to when I was able to because of a fear of what may happen in the future. It would be very easy to get bitter at the years that have gone by with misdiagnoses and all the opportunities that I've missed out on as a result of the problem. I am not going to waste more time!

One thing I would say to anyone is listen to your instincts. If you feel something is not right than keep pushing for an answer and as in my case request an MRI scan. Also if you're not happy with one neurosurgeon get further opinions. The contrast in the neurosurgeons between the two hospitals was incredible.

Pippa – diagnosed 2017

PippaHi, my name is Pippa. On 29th of January 2017 my husband came up to bed to find me having a seizure. He tried to wake me up but I wasn't responding. He phoned an ambulance, and I had several more severe seizures in the ambulance.

I was put in an induced coma to calm my brain down so they could run some tests to see what had caused me to have fits. I had a CT scan which showed a lesion which they believed was a “stroke”. I was transferred to a stroke ward for a week where they could assess me. To cut a long story short, it turned out that I hadn't had a stroke at all, an MRI revealed a mass on my brain.

It was a moment I would never forget, but strangely a moment of calm came over me and I was more concerned about how my family were reacting to the news. I don't think the news would really properly sink in for a number of months, and I don't think it's underestimating the feelings by describing them as PTSD.

Shortly after the diagnosis I had a craniotomy to remove the lump. It was a stressful time but I got through it. Unfortunately though, a follow up scan revealed residual tumour which was a big blow.

Thankfully further surgery was still possible, although a daunting prospect so soon after my last op (I hadn't felt like I had fully recovered from the first one). This time as well it was elected to perform the surgery while I was awake to maximise chance of success and minimise risks of any possible deficit.

 The awake craniotomy wasn't as bad as I imagined it would be. And in hind sight, having 2 separate operations may have worked out for the best as it allowed my surgeon to perform a “supramaximal resection” which is good news. We want to delay the use of radiotherapy/chemotherapy for as long as possible.

I'm still recovering from the whole ordeal of last year, both physically and mentally. I think the only thing that has gotten me through is the support of my family and pushing myself to be positive for my daughter.

Wendy – diagnosed February 2017

WendyMy name is Wendy, and I was diagnosed with a grade 2 diffuse astrocytoma in February this year (2017) after a grand mal seizure. Previously I had experienced weakness in my right foot and leg but didn't think much about it - eventually I went to the GP when I'd noticed a foot drop.

I was referred to neurology but before I was seen I had the seizure and the tumour was discovered. In June this year I underwent an awake craniotomy. I was awake during part of the operation because the tumour was on the motor strip on the left of my brain, which is why my right leg had been affected. The operation was successful in removing most of the tumour, but I suffered weakness in the right side of my body and lost complete use of my right leg for about two weeks after the operation. This is gradually returning which is a big relief. I am currently on 3 monthly scans to monitor the tumour, and have been told by the oncologist that I will require radiotherapy when the tumour starts to regrow.

I am lucky to have wonderful friends and family who have helped me enormously through this time, as well as having a beautiful four year old son who gives me a reason to keep going and keeps me on my toes! I also have a brilliant neurosurgery consultant, who has been so encouraging when I have felt frustrated or low. My advice to others who have been diagnosed with a low grade glioma is to live, love, do what you've always wanted to. None of us know how long we have, but a diagnosis like this really brings priorities to the fore and makes you want to grab life while you can.